Information Topic: The optimal role of patient organisations in drug development Location and date: De Rode Hoed, Amsterdam, The Netherlands March 24th 2011 Background: The position of patients has changed from ‘sufferers’ and users of care to partners in care, research and drug development. Over the last decade patient organisations have not only played a role in lobbying but also shown they are willing to shoulder responsibility contribute towards advancing treatments and a cure. Some organisations have started their own research institutes, others have invested in extramural research, clinical centers and industry to develop viable treatments. Patient organisations have set up patient registries, biobanks and databases with patient registered outcomes. They have advised on standards of care, trial design and outcome measures. Government institutions encourage the role of patient organisations in Health Care, but find it difficult to partner with patient organisations. Industry could benefit from collaboration with patient organisations at an early stage in drug development. It is the members of these organisations who participate in clinical trials and will ultimately be the ones to decide whether the tested drugs are beneficial to them to an extent that EMA and FDA will allow these drugs. This will be the Kick-Off meeting for a discussion on how partnership with patient organsiations can contribute to more efficient drug development. Participants: Industry – Academia – Patient organisations – Policy makers Total expected: 200+
Chair: Jan Raaijmakers Vice President External Scientific Collaborations Europe, GSK, www.gsk.com Speakers: Serge Braun, Scientific Director AFM http://www.afm-france.org/afm-english_version/ewb_pages/d/decouvrirafm_missions_strategie.php
Pat Furlong, Founder PPMD
http://www.newyorker.com/reporting/2010/12/20/101220fa_fact_colapinto
Kim Wever, Patient Partner (EU FP7) http://patientpartner-europe.eu/en/home Jeana Frost, PatientsLikeMe http://www.patientslikeme.com/ Henk-Willem Laan and Raoul Hennekam, Marshall Smith Syndrome http://www.marshallsmith.org/en/home Maryze Schonveld van der Linden, Patient Centered Solutions www.pacesworld.com Michael Rutgers, Astma Foundation www.astmafonds.nl Douwe Witteveen, Legal Director Genzyme EU www.genzyme.eu
To be announced: European Medicines Agency http://www.ema.europa.eu/ Eurordis
www.eurordis.org/ Member of Parlement
The program will cover the following subjects: Participation of patient organisations from an industry perspective Funding research in Industry and Academia by patient organisations Companies and research institutions set up en owned by patient organisations Influence of patient organisations on research agenda Role of patient organisations in Diagnostics Role of patient organisations in Patient Registries/databases Role of patient organisations in Biobanks Recruitement of patients for clinical trials by patient organisations Role of patient organisations in outcome measures for clinical trials Role of patient organisations in Trial design Patient Recorded Outcomes Role of patient organisations in Lobbying and Reimbursement Position of the Patient Voice in Ethics Committees Codes of conduct in communication between companies and patients/patientorganisations Charters between Industry and patient organisations
Organisation: Elizabeth Vroom Foundation The Meeting Prinsengracht 1077c 1017JG Amsterdam The Netherlands
[email protected] www.themeeting.eu Chamber of Commerce: 51384647
Elizabeth Vroom is founder and president of the Duchenne Parent Project Netherlands since 1995 and Chair and co-founder of the worldwide organisation UPPMD (United Parent Projects Muscular Dystrophy). She is also the founder of the world wide Duchenne-Community.org which informs patients and parents from more than 40 countries about Care and ongoing Research and Drug development. She serves on several advisory boards regarding Care, Research, Ethics, Development of new medicines and Regulatory Issues (Doek committee) in the Netherlands as well as international. She received the BioFarmind Innovation Award for her contibution to innovation in Health Care in the Netherlands. In 2010 she was speaker on several conferences related to drug development: the EPPOSI, FIGON and BIOFARMIND conferences.
